Feeding tube can’t stop Burlington teen

Submitted photo. Andrew Bodnar has been living with a feeding tube since 2009.

Burlington >> 19-year-old Andrew Bodnar is more active today with his feeding tube than he was before the volvulus, a twist in his intestines, forced surgeons to remove the majority of his small intestine in 2009. Bodnar now receives home enteral nutrition (HEN) therapy 18 hours a day.

“When your life is suddenly on the line, you look back and say what have I done? I have to do these things before I can’t anymore,” Bodnar said.

He graduated from Oliver Wolcott Technical High School in 2013, and is currently a freshman at Tunxis Community College in Farmington where he studies criminal justice and computer information systems. He hopes to go into computer forensics one day.

Bodnar has also excelled in Boy Scouts to become an Eagle Scout, started swimming again and repelled off a 17-story building, among other personal accomplishments since getting his feeding tube.

Advertisement

What’s on his list of things to try? Skydiving - an answer that causes his mother to squirm in her chair.

“We’re thankful that he’s a stubborn teenager and he wants to prove everyone and everything they say wrong,” said Bodnar’s mother, Robin.

“Living with a tube doesn’t mean you can’t go do this. It just makes me want to do more - to prove to people that you can go skydiving with these tubes,” said Bodnar.

This year, Feeding Tube Awareness Week runs from Feb. 9 through Feb. 15, and the theme, “Nothing Can Hold Us Back,” is one that Bodnar can personally relate to.

They say it might have been a birth defect that caused his intestines to twist, sending him into septic shock, but doctors don’t really know. Had Bodnar’s parents not gotten him to the hospital in time, he likely would have died.

“The doctor came out of surgery and said, ‘I wish I could tell you it was a burst appendix,’” said Robin Bodnar.

She was in shock because up until that point, she thought a burst appendix was the worst thing that could happen to her child. The reality of the situation was much more dire.

Doctors removed over 20 feet of Bodnar’s intestines, leaving him with just 40 to 44 centimeters instead of the 22 feet most people have. Instead of winding around inside his body, Bodnar’s intestines descend in a straight line. His mother explained there is a 10 minute transit time from his mouth to his colon.

The machinery and feeding tube that pump a slow dose of 135 ml per hour into his system are housed in a backpack he carries with him throughout the day.

“They said he’d probably never eat a bite again,” said Robin Bodnar, “but he eats.”

It took a long time, but Bodnar now has a fried egg sandwich most mornings for breakfast and a grilled cheese and a Snapple for lunch. He said he’s not supposed to eat sugary foods and vegetables are hard for him too.

He disconnects from his feeding tube while he’s in classes at Tunxis because he said it’s more of a hassle than anything. He reconnects when he’s at home, getting the majority of his nutrition through the tube. Weight continues to be an ongoing battle for Bodnar.

“What can you do?” he asked with a smile and a shrug.

During his first surgeries Bodnar was outfitted with a permanent IV to keep his fluids and body weight up. He was finally able to have the central line removed in December 2011. Bodnar knows he will likely have to go back on an IV at some point in his life, but for now he’s enjoying not having to worry about it.

He hopes to get rid of the feeding tube all together one day. Bodnar and his mother know it’s not a very realistic dream, but it’s still one they hold on to.

Feeding Tube Awareness Week was first launched by Feeding Tube Awareness in 2011. According to their website, “The mission of Awareness Week is to promote the positive benefits of feeding tubes as a life saving medical intervention. The week also serves to educate the broader public about the medical reasons that children are tube fed, the challenges that tube feeding families face and day-to-day life with a tube fed child. Feeding Tube Awareness Week connects tube feeding families. Seeing how many other families are going through similar things makes people feel less alone.”

That sense of community and understanding is what Awareness Week is all about, and it’s something the Bodnars are trying to offer to other local families.

Bodnar and his mother are in the process of putting together support packets for families at Connecticut Children’s Medical Center, where he is a patient. The packets will include information on the Oley Foundation, Feeding Tube Awareness and the Tube Feeding Troubleshooting Guide as well as their own contact details for families to reach out and connect with them. They will meet with a discharge planner at the hospital to see if they’re willing to hand out the packets to patients.

“It would have been wonderful [to have something like this] back then,” said Bodnar. “Hopefully we get this to the people who need it so they don’t feel so alone.”

About the Author

Kate Hartman works as a writer for Connecticut Magazine and formerly covered the towns of Harwinton, Burlington, New Hartford, Barkhamsted and Canton for The Register Citizen. Reach the author at khartman@registercitizen.com
or follow Kate on Twitter: @CTMagKate.